Summer in Atlanta! June 29, 2008

 I’m so thankful that my energy level is improving and I can be out and about with family and friends.  While our grandchildren swim, attend day camps, sleep away camps, enjoy playing with their friends and bringing happiness to Mimi and Pop (that would be Norman and me), we continue to enjoy our in town house that allows us to see them often.

We will be in Atlanta all of July, although last year I declared to myself that it was just too hot here in the middle of the summer.  Norman and I plan to hold Camp Mimi & Pop at our house for a few days in July.  We will have only 2 of our 6 grandchildren here for our camp since the two year old twins are too young and the oldest girls will be away at big camp.  We are having a great time planning themes for Camp Mimi and Pop.  We think one day will be an Olympic theme, one day we will have Transportation as a theme and one day we will have Music as a theme.  We are thankful to have so many wonderful places right here in Atlanta to visit that offer enrichment, education and of course fun for all of us.    If any of you have suggestions, we welcome them.  The grandchildren who will be with us for Camp Mimi & Pop are 5 and 7 - a boy and a girl.  We can’t wait!

An update on my medical adventure:  I have completed the 6 treatments of Cisplatin and Abraxane and my CA125 numbers have come down dramatically.  However, they are not normal, and may never be meaning that I am not in remission.  The good news is that I will begin a protocol of just Abraxane for 3 treatments every three weeks which will only take about 2 hours in the doctor’s office rather than 9 hours that I have had with my previous 6 treatments.   I won’t have reactions to this drug, which is a great thing, and I won’t have to load my body up with pre-meds which have made me feel yucky for a few days during and after treatments.  So we are praying that this will be a good maintenance plan for me.

Last week I had a great time going with our daughter Jill to Symphony Hall here in Atlanta to hear rehearsals of the 4th of July concert that will be performed by the Atlanta Symphony Youth Orchestra Alumni Orchestra in Centennial Olympic Park.  Jill was in this orchestra for 4 years when she was in high school and it is great to hear these talented alumni perform patriotic music as they prepare for the concert.  I am told that it will be broadcast on Channel 11 here in Atlanta the night of July 4th.  I plan to go to the concert and wave my American flag as we salute the 4th.

I hope you are all doing well and enjoying your summer.  Thank you for continuing to love, support and pray for me and my family.

Please let me know how you are doing and what is going on with you this summer.

Love and blessings,

Linda

May 17th May 17, 2008

Hello Blogging Friends,

I hope you are all doing well and enjoying the glories of Spring.  All is well with me and our family.  I continue to have chemo treatments every three weeks which are not a lot of fun, but I rebound after 3 days and feel great again.  I am so thankful.

Since I last wrote, I have been to New York with some friends for a few days and had a wonderful time.  We attended a concert of sacred choral music at the Cathedral of St. Thomas on 5th Avenue and saw the play Jersey Boys.  The music, which I remember dancing to as a teenager in LaGrange, was fantastic.  We also took a three hour boat tour around Manhattan which I highly recommend.  Did you know there are 20 bridges that lead to Manhattan?  Our boat went under 19 of them.  The guide never explained about the one we missed…..We visited the Tenement Museum in the East Side of Manhattan and came away with a new and deeper appreciation of those who came to America with empty pockets, big dreams and a strong work ethic.  I highly recommend visiting the Museum if you are in New York.

Tomorrow I’m going to St. Simons for a couple of days with Jill, then her wonderful husband Andy will join her and I will return to Atlanta for chemo.

I am blessed to have the energy and strength to continue to enjoy our family.  It’s graduation time from kindergarden for Bo and from 5th grade for Wimberly, both events that I would not want to miss.  We all celebrated Mother’s Day with a picnic in the park and an effort to fly kites.  The wind was so strong that it was challenging, but thankfully my faithful wig did not blow off!

I think of you all with great love and thanksgiving or all you continue to mean to me and my family.

Love and Blessings,

Linda

April 12th Note from Linda April 12, 2008

Hello Blogging Friends,
Jill told me today that two of her friends asked if I was going to update my blog. I am flattered to know that some of you are still looking at our blog, and especially grateful that you continue to think about my journey.
Norman wrote about my last chemo experience, but yesterday’s was even more impressive. I spent 9 & 1/2 hours at Dr. Filip’s office. I think that’s a record. When I left at 6:30 the cleaning crew was waiting for me to leave. Once again, I had another impressive reaction to cisplatin, the chemo drug that appears to be shrinking the tumor (this is great news!). It got the attention of the wonderful nurses who have become my good friends, along with Dr. Filip. After stopping the IV and taking some more medicines, we were able to continue with the chemo at a slower rate. I am so thankful for the my nurse friends who take such good care of me. When I have an allergic reaction, my blood pressure drops, my heart rate soars and I turn red like a lobster. It’s not pretty and can be a little bit scary the first time it happens. I am getting to be pretty good at this, however, so I have come to expect it.
Today I returned to the doctor to get a neulasta shot for my white blood cells. One of the dear nurses who took care of me yesterday gave me a tiny stuffed bunny with a sweet note saying that they “don’t like it when I don’t feel good”. How kind. As I was crossing Peachtree following my appointment, a nurse (honestly, I can’t remember her) recognized me, gave me a big hug and told me how good I looked. She reminded me that she works on floor 5 South, where I was in January - those bleak and long days when I was so sick. I think she was shocked to see me out with my tennis shoes and hat on - alive! God is good!
I have had wonderful days of feeling good and strong, and am so thankful. Now that I can eat real food, I am enjoying doing a little bit of cooking, eating out with Norman and friends, and even drinking some milkshakes to keep my weight up.
Norman and I are going to St. Simons later this month. It’s our favorite place to go and we are so grateful that I can walk on the beach, bike and mostly eat. Our favorite restaurants are on the Georgia Coast and April is a lovely time there.
I found the perfect cartoon that describes Norman in a New Yorker magazine. I wish I had the talent to scan it and put it on the blog. (Edited by Jill: I found it and have posted it here, sorry it is so small.)  It says “This man is a wonderful primary-care husband.”This describes Norman exactly. His support, care and encouragement continue to inspire me and give me strength for each day. I am most blessed.
I am enjoying the beautiful spring in Atlanta, the flowering of the dog woods and azaleas, and the promise of new life. I continue to take long walks in the neighborhood and go to yoga classes at the Gym at Peachtree. Additionally, I am getting back to my volunteer work with the Atlanta Symphony which gives me great joy. As always, attending worship at our wonderful church, North Avenue Presbyterian, continues to strengthen my faith, touch my soul and challenge me to become more spiritual.
We have had many fun times with our children and grandchildren, one of the joys of living so close. Jill and Andy took us last week to cool spot for breakfast in Virginia Highlands, a real hip area of Atlanta. We love getting out of our zip code with our children.
Tomorrow night I am going with a friend to the Atlanta Ballet for a performance with the ballet and someone named Big Boi. You may have read about it in the NY Times, or the Atlanta paper. I believe Big Boi is a rap star and we know about the Atlanta Ballet. It should be quite interesting.
Thank you for all that you mean to me and my family. I continue to be amazed by your caring, love and prayers.
Love and blessings,
Linda

March 27 Note from Norman March 26, 2008

     This is an update on Linda. There are two  good developments for which we are thankful. This past weekend following her second chemotherapy treatment -on Thursday-  rather than a  weekend of nausea she had  only a “queasy” one  which is a step up in the  chemo side effects rating. She was able to go to two Easter weekend church services and do her usual neighborhood walks–in sharp contrast to the weekend which followed her first treatment three weeks earlier. The other very positive development is that she learned today that she will now discontinue hyperalimenatation  which is medical talk for intravenous feeding at home and will continue the transition to “real food”. This is a big deal for lots of reasons including the extent to which it lowers the obvious  risk of infection associated with two-a-day handling of the infusion stuff–and the added risk of having an amateur (that would be me) connecting and operating the pre-programmed infusion pump.

 

     With an awareness that caution is always in order in assessing cancer treatment and responses, I am excited to say that she is doing much better than appeared probable in the weeks just before and after her significant surgery in early January.     Her psychological and physical resilience and her ADAPTABILITY are quiet remarkable in my view.  She occasionally has referred to the “hassle” involved in the IV procedures and related medical steps, but such is her adaptability that, essentially, she accepted them and did not treat or characterize them as intolerable or use them as any excuse for a gloomy outlook.  She is driving again and going to yoga classes where she does part of her pre-surgery exercise routines. It will be awhile before any real assessment can be made of the impact of the potent and toxic chemotherapy on the tumor which was rampant a few weeks ago,  but she has gained back some lost weight and in my assessment has made real progress. The next step is to see if she can get adequate nutrition and hydration without the IV nutrition.

 

     As she has expressed to many of you in notes and emails she is so grateful to you for your prayers and credits those prayers (and our own) and your love for making her medical care more effective than most indicators would have predicted. Obviously, her medical story is a continuing one featuring highs, lows and steps in between (as are all our real-life  stories of course). But I am grateful to be able to share with you the news of this day’s little milestone of her return to “real food” and we will trust that she continues to gain strength and stamina without the nightly bags of TPN (in all the medical acronyms we have heard I never learned  the actual words  for this one). Thanks to all of you for what you mean to Linda and we will stay in touch.

 

    

HAPPY BIRTHDAY MOM!!!! March 12, 2008

That’s right!!! Today is Mom’s Birthday!!!!!!!

WE LOVE YOU MOM!! Have a GREAT day!!

On the agenda: Lunch with Jill, after possibly coming up to Buckhead Church to watch Jill play her singles match in the big staff ping pong tournament. (seriously, I have the BEST job EVER - yes, this is serious stuff…)

A Family trip to Callaway Gardens this weekend!! Probably the first family outing in close to 3 years. Since we live close, we do get to see each other a lot, but, family trips are few and far between with 14 of us!! Everyone is so looking forward to this! Mom’s sister Judy, her husband Sonny, and a few more of the Boggus clan in LaGrange will come down to join us Friday night for Sprayberry’s BBQ and Cake! (which, we are hoping Mom can at least have a bit of..)

Pictures to come soon!

- Jill

March 6 Note from Norman March 7, 2008

The past weekend was a challenging one for Linda following her first post surgery chemo therapy on Thursday.  Her oncologist settled upon a combination of cisplatin, an old drug to which Linda had a good response 15 years ago and abraxane which is a new drug, one of many derivatives of taxol.  The infusion was arduous and lasted 7 hours.  The following 3 days featured considerable nausea.  On the fourth day, the all too familiar pattern, she began to perk up and feel better; that trend is picking up momentum and this coming weekend promises to be much better. Her chemo treatments will be at 3 week intervals for 6 treatments.  She is still largely dependent upon liquid nutrition which she gets each night by way of an IV pump, but the good news is that for the last two days she has eaten a lightly cooked egg and toast, so we hope that is the beginning of a transition to  more real food. She talks wistfully of BLT sandwiches, ice cream and trips to the Varsity.  Her experience is a jarring reminder of how much of the daily routine of most of us involves some aspect of food…buying it…preparing it…eating it and talking about it  I have offered to dine alone on the back porch to spare her the indignity of seeing but not partaking of conventional  food in her own kitchen, but she has not taken me up on that offer yet.

We have had a least one “freak out” incident. One night early this week the IV tubing involved in her infusion somehow disengaged from the tubing connected to her and we had a momentary “blood on the floor” experience which was outside our core competence to address. But with the help of a fast and tense call to Visiting Nurse we restored order, apparently without lasting consequences.

In addition to getting through the difficult 3 days which follow chemo,  Linda’s spirits were lifted by our going to see our granddaughter Wimberly last night in the Fifth Grade Musical.

Today was also significant because she took her longest neighborhood walk since her surgery, and she has high hopes of taking a yoga class tomorrow.  It  must sound a little strange that we  feel such genuine  excitement and gratitude about her lengthening  neighborhood walks and yoga class, but these are big milestones in the context of her medical scenario, and most of you know that her optimistic enthusiasm about these kind of simple gifts is both real and contagious.

Thanks for your continuing prayers and support and we will stay in touch.

Wednesday report - from Linda February 27, 2008

In an effort to prevent Norman and Jill from telling too many tales on me, I have decided that  it’s time that I write again and bring you up to date on what my days look like here at 51 Park Circle.

Today, for instance, was filled with excitement.  After Norman and I took care of my IV infusion bag, pump and tubing we drove to Sandy Springs to the Drivers License Renewal Office.  Since my license expires next month we thought we should do this right away to keep me from being taken to jail - not a good thing for a high maintenance person.  Happily, we had no problem getting our licenses renewed and now we are legal drivers for the next 5 years.  Compared with long lines that we remember from past, the process this morning went very quickly and was quite pleasant.  Since we are both over 64, we had to take an eye exam to get our license.  We both passed, although Norman took his glasses off when he took his exam - I’m still trying to figure that out!!!

Following that exciting outing, we went to Goldberg’s Deli, known for great bagels and famous breakfast dishes.  Norman ordered a BLT sandwich and I ordered their famous chicken and vegetable soup without the chicken and vegetables.  The waiter didn’t blink and eye and brought me a cup of the most wonderful broth I have ever tasted.   I guess I’m not the only person in Atlanta who is on a clear liquid diet.

This afternoon I have been reading the papers, catching up on laundry and finishing a wonderful book, “Three Cups of Tea”.  I will walk around the block shortly and enjoy seeing our neighbors out and about, hearing the sounds of children on their bikes and scooters and probably see some of our wonderful grandchildren in the mix.

I think you know that I begin chemo tomorrow morning at 9:00.  I will be taking a drug that I had in 1993 when I was first diagnosed. Since I had a good response then, my doctor thinks there is a good chance that we can repeat this good response.  We appreciate your prayers for this, as you know.

I read every response that you post on the blog with a deep sense of gratitude for your caring hearts and loving spirits.  My family and I are most blessed to have you walking this path with us. I would love to hear about your days - I’m guessing each of you has interesting things to share that are uplifting and encouraging. Remember that if you want to contact me directly, my email is: NLU745@earthlink.net

Blessings and love,
Linda

Note from Norman February 24, 2008

Linda came home from the hospital Thursday afternoon. She is on basically a liquid diet and takes additional nutrition by IV infusions. Her characterization of this routine is some variation of  …”not fun”, “boring”, and “high maintenance”. But when parts of this become frustrating, she returns quickly to an upbeat frame of mind. As all of you, know she has a congenital positive attitude.  The technology of the home infusing device is a little challenging for us, but with the help of a nurse from the non-profit group, Visiting Nurse Healthcare System of Atlanta, we are learning to make it work. I was a member of the Board of the Visiting Nurse group for lots of years and had the honor of being the Chair of the Board for a few years, but I have gained a major new insight into the role and mission of Visiting Nurse.  They make it possible for some important parts of the modern health case system to be accessible to  patients in their homes.

Linda has to marshal and manage her strength and energy in a thoughtful way, but each day includes visits from family and many other “simple pleasures” of being home. She has a real ability to draw strength from the love that friends have and express for her. Each day as she opens mail, she maintains a steady stream of comments which include…”can you believe ……(this person) went out and got this card to send to me?……….”(this person) is SO sweet…after all she has done for me! etc. Of course, the gifts of food, plants and other such helpful and practical things mean so much to all of us. It has occurred to me that it is a blessed and practical gift to have a temperament that is able to credit the love of friends as such a  meaningful resource and to draw tangible, measurable strength from it and Linda is blessed in that way.

I hope that soon her daily agenda will again include her note writing. A lot of people have told me over the years how touched they have been with some note they have had from Linda with a short, insightful, heart-felt comment. As her strength increases I think her note writing will start-up again.

She is very goal oriented and we decided today that her goal will be to feel strong enough to go to church next Sunday.  Thanks for your prayers and love of Linda. We will stay in touch.

Note from Norman February 20, 2008

We expect that Linda will be able to go home tomorrow – Thursday.  She has been at Piedmont Hospital since Saturday essentially getting liquid nutrients which became necessary because of a partial obstruction in her digestive apparatus.  She has been comfortable and doing a lot of walking and socializing on her floor.  When she goes home tomorrow she will be able to eat/drink a liquid diet and this will be supplemented by a nightly infusion of nutrients via a traditional IV mechanism.  This is not five star cuisine but it works for now and she looks, feels, and acts amazingly well.

 

In the next couple of days she will begin a cycle of chemotherapy intended to impact the tumor which is probably responsible for the partial obstruction.  This chemo cycle will feature one drug with a long history – including a history with Linda – and a more recently developed one.  The medical “trick” is to get the dosage right so that benefits are greater than the toxic side effects.  In reviewing the options with her doctors and agreeing on the best strategy, her attitude can best be described as “business like with a light touch.”  I heard her inquire of one nurse whether there is a “chocolate-based IV nutrient?”  Neither the nurse nor I know for sure whether she intended it to be a serious question.

 

I should point out that her decision-making and style of developing strategy with her medical team has been consistent throughout her long “medical adventure.”  In 1992 she developed bi-lateral, stage three, ovarian cancer.  After surgery we talked with several respected oncologists.  In her interview with a fairly young oncologist she described our family, including our then 13 year old daughter, Jill, and Linda explained to this doctor that she was a full-time volunteer for the Atlanta Olympic Games which were four years into the future (summer of 1996).  She then said – “Doctor, I will make you a deal.  If you will keep me alive until the Olympic Games, I will get you some tickets.”  They shook hands as if they had agreed on a business deal.  Early in 1996 she had more major surgery and chemotherapy featuring a recent developed drug known as Taxol which I credit with helping to give her years of active, quality life.  During the games Linda worked as a volunteer in the Media Center with her sort of blond wig, little sleep, and a constant high level of excitement.  She was clearly functioning beyond the normal medical parameters of ovarian cancer treatment during that experience.

 

In the too-numerous recurrences and remissions that have followed her approach has always been the same – “let’s see the options, the best case scenario, and the best approach.”  She has always managed to have results beyond (as in better than) the normal medical parameters indicated by the literature and studies involving the disease.  In the current circumstances she and her doctors have used the same approach she has always brought to her treatment alternatives, and I am highly confident that her results will be better than the usual medical parameters for the treatment.  (Neither she nor I know what the usual parameters are for her current circumstance.)

 

I should add this – for as long as I have known her she has smiled often, exuded joy and walked in faith.  She does so still.  She will be adding her own notes to the blog in the very near future and will stay in touch.

 

Thanks for your continued support and prayers.

Update - Mom back in hospital… February 16, 2008

This will be quick: Mom is back in the hospital with some type of blockage in the pelvic area. We’re not sure what the blockage is, but she has to remain in the hospital while they figure out what to do about it because she is unable to get proper nutrients. Obviously this is a very discouraging step backwards..please pray for healing to this end…